The Journey of James Weston

Monday, August 16th, 2021 We had such a sweet nurse last night she came in any time his heart rate was up and sang him songs. Mom will never complain about nurses lovin' on her baby. James had a bowel movement around 5am. Of course you know when it's shift change when new nurse takes over, alarms are going off but no one is coming in. It's always a good sign that it's going to be a rough day. Mom and Dad watched the 24 required videos on the TV regarding G-tubes and tracheostomies. We also completed CPR training. We learned what to do in an emergency situation, if his chest was rising but he was unconscious. Doing CPR on a baby with a trach is a lot different than a baby without a trach. He's also really important that Mom and Dad feel very comfortable with this since a lot of times first responders are not familiar. Just recently in Mom's Facebook trach group there was a situation where the first responder did not bag the baby correctly and the baby did not mak...

Sunday, August 15th, 2021 Late Night:   Needed a suction around 12:30a and around 3:30am.   James and Dad were able to sleep a good amount around that from 9:30p on after James got his evening cocktail of melatonin and other meds.   Seems like James is chewing on his secretions as he’s trying to go back to sleep, but James decided to stay awake from 4a until after shift change at 7am.  Early Morning:  He had a poop filled diaper to begin the day and another one around lunch time.  Since his Gtube is going into a diaper to release the bile, they are tracking this total every 6 hours and every 24 hours.  He had 286 ML of output in 24 hours from 7a-7a. He has a weird wheezy cough. We will continue to monitor. Doesn’t seem like a concern at the moment.  Dad spoke with the doctor today.  He's down to clamp the gtube line for one hour every 12 hours to start to see how James does.  Mom mentioned that the gastric juice needs to flo...

Saturday, August 14th, 2021 He has been doing this new thing where he is coughing, then starts choking, then turns purple quickly. He is coughing up his own secretions out of the trach, but it is scary to watch.  Pulmonologist stopped in and in summary said that he does not want to try to wean the PEEP while inpatient. He said that he believes we should get the GI situation under control before going home. Mom informed him that the doctor will be taking over this week is going to be pushing for our discharge. He said that it is good that someone on the team is pushing for it. And then the GI doctor stopped in and said he heard Mom spoke to the pulmonologist about concerns regarding the G-tube leaking into the diaper. Concerns about how long this is going to be. He said that it should only be a few days. Mom let him know about she reached out to the G-tube Facebook group of moms and a lot of them say that they've had to vent into the diaper for several months, sometimes permanently....

Friday, August 13th, 2021 💉 Mom requested that James get Versed for his blood labs. It takes 15 minutes to kick in. Unfortunately they didn't wait and immediately started with sticking him. Mom sounds like a broken record everytime they need to do labs, letting them know that James is a hard stick, his veins are branched out, he is strong, that they will get the catheter in and then he will pull and you'll lose it if there aren't enough people holding him down. Every single time they have to stick him multiple times and say, "Man he is strong". Yes, now can someone make a note in his chart after 8 months? He was stuck 3 times. The first tube clotted so they needed to draw again. Mom asked if they could check for Factor V Leiden which is a clotting disorder that she has; there is a 50% chance that it gets passed down to James.  😷 Covid is rampant here in the PICU. Our neighbors have it and the staff has to where isolation gowns when entering. 😬 💩 Gave James a g...